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Global SDS Family Coffee Chat
Global SDS Family Coffee Chat

So., 13. Juli

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Virtual event

Global SDS Family Coffee Chat

Monthly virtual get-together to build community and support.

Zeit & Ort

20 weitere Termine

13. Juli 2025, 15:00 – 17:00

Virtual event

Über die Veranstaltung

Global SDS Family Coffee Chat

Register at www.sdsalliance.org/coffee to receive the meeting link and details.

The goal and vision for this program is to connect SDS families worldwide. Living with ultra-rare diseases like SDS can feel very isolating, and family connections are an essential source of comfort, information, knowledge, and support.

This virtual meeting is for patient families by patient families. The organizers - also part of the community - are creating infrastructure and support for the community to thrive.

For this meeting, the SDS family community is defined as people with a genetically confirmed diagnosis of SDS or an SDS-like syndrome (based on the genes SBDS, EIF1, SRP54, and DNAJC21) and their direct caregivers (parents, legal guardians, or partners).

Please only join if you meet these criteria. If you are seeking genetic testing and need guidance, please contact genetics@SDSAlliance.org.

Register at www.sdsalliance.org/coffee to receive the meeting link and details. Login and call-in information will be emailed to participants who sign-up before the meeting. If we don't already know you, we may reach out to you to welcome you to the community.

We look forward to connecting soon!

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